Thursday, May 29, 2008

We're On a Roll!

More good news from our new OB this week. After another ultrasound and a review of the diagnosis from our cardiologists, he said we don't have to do the 32-week amniocentisis! The point of that test would have been to prepare us to deal with any severe chromosomal abnormalities that can accompany some congential heart conditions. But from what he sees from the way the baby is developing, he said he is no longer concerned enough about chromosomal problems to add possible risk to the pregnancy. That is great news! I always felt uneasy about that test for some reason and now I don't have to decide to go with my gut or my head--both of which are on overload right now.

We also received news that Matt's second cousin Cassie (odd that we even know Matt's second cousins, but he comes from an exceptionally close family) who is pregnant with her first little boy was recently diagnosed with Hypoplastic Right Heart Syndrome (similar to our original diagnosis). It's hard to believe that two conditions, DILV and HRHS, that are so rare and so foreign to our family history are now becoming a part of our vocabulary. It also seems remarkable to me that our babies are likely to share some time in the PICU together if not through their first surgeries, then for their Glenn and Fontan operations. Where God sends trials he also sends unexpected sources of strength. Hopefully, our babies can strengthen each other to push through their rough starts to grow up big and strong and full enough of themselves to compare scars. Please keep Cassie and her baby in your prayers.

My other boys are doing great as well. Preston has finally got the hang of potty training and I could not be happier. They both seem so big and independent lately. I feel ready to have another baby in the house and am truly looking forward to a fantastic summer full of mini-adventures with them.

We feel so blessed by all of your well wishes and offers of help. We are actually doing fantastically well. Until next time!

4 comments:

Hi, I found your blog and wanted to post a note about congenital heart defects. I also noticed that you have links to Alex (who is the same age as my son, they were in the PICU together) and Gracie. I am Jacob's mom from their links.

Jacob is 13 months old now and was born with a heart defect: Transposition of the Great Arteries (TGA). We did not know before he was born and he had to be emergency transfered to PCMC. He had open heart surgery at Primary Children's when he was 5 days old.

My sister's son also has a heart defect: Tetralogy of Fallot. It is interesting to see defects that run in families although "they" say it is hard to know what is genetics and what is just amazing coincidences.

I assume Brynn has mentioned the support group Intermountain Healing Hearts to you but I just wanted to make sure you (and you cousin-in-law) knew that there are of group of us parents who have been in your shoes and are here if you need anything or have questions we can help you with.

The group website is: www.IntermountainHealingHearts.orgWe also have a Yahoo group for email exchange.

Hi Mindi, Glad to see how well you are doing. I had the amnio-woah-so not fun. Though the doctors sprung it on me, so it almost made it bearable. I wanted to let you know I responded to your email but I have a hunch it didn't go through. Feel free to email me again through my blog-and leave your email addy (the return address goes to no-reply). Enjoy the rest of your preganancy!Sabrina

I did not realize you were dealing with all of this. What an amazing blessing and answer to your prayers. This little boy is meant to be with you and Matt. I just know it. How lucky he is to have two parents and two brothers that already love him so much. With all that love, anything is possible. He already sounds so strong. Please let me know if I can do anything to help. Even if its just taking Tyler and Preston.

Live. Laugh. Love.

About McKay

Mr. McKay is a miracle. He was diagnosed with a soup of congenital heart defects while still in utero including: double inlet left ventricle (DILV), Transposition of the Great Arteries (TGA), a large ASD which has now been modified to create a single atrium, pulmonary atresia, and dextrocardia. He has undergone a series of three open heart surgeries to reroute his plumbing into a flow more likely to meet his growing body's demand for oxygen. He is post BT Shunt (August 22, 2008) and post-Glenn (November 25, 2008), and most recently traveled cross country to have the Fontan procedure at the Children's Hospital of Philadelphia (July 9, 2010). Today, McKay is a growing near-three-year old challenged with developmental hurdles we are anxiously trying to help him overcome. McKay offers heart baby hope of the most robust proportions. This blog chronicles our adventures.